Our stories

Our stories

Read the experiences of people living with insulinomas. We are always welcoming new stories, contact us to share yours.

Fleur's Story

My story starts in the summer of 1995. Before that I had enjoyed robust health, was a size 10 and weighed 9 stone. The first “funny turn” happened when I was at home and my brother was downstairs. I became confused and couldn’t understand the noises he made and what he was doing. I had a few more attacks and thought I was going mad. Finally I had one of these “funny turns” at work and my manager sent me to the doctor. The doctor said it was probably just an infection and gave me antibiotics. However the attacks still happened and I saw the doctor again. Blood tests showed that my blood sugar was low and I was having hypoglycaemic attacks (hypos). I was advised to eat half a chocolate bar when I was having a hypo.

After a year or so of these turns I found that I could control them through diet. The main triggers for my hypos was too much alcohol or missing a meal. For a long time I believed that it was my fault, that I was doing something to create these hypos. The hypos became more frequent and I became embarrassed about having them. I wouldn’t tell anyone and would consume something sugary as quickly as possible so people wouldn’t realise.

I struggled for 13 years to manage my hypos. My treatment for hypos was orange juice and a packet of biscuits or something sweet. When you are having a hypo it is difficult to control how much sugar you eat as your body craves it to rectify the problem. I would eat until I felt better. The result of this “treatment” was a weight gain of 3 stone and a size 14-16 in clothes.

I went to see a private Endocrinologist and after several blood tests was told that medical science had failed me and that my low blood sugar wasn’t a problem. I left upset thinking I was making a big thing out of nothing.

In 2008 I developed neurological problems. I was dizzy all the time, unable to speak properly, couldn’t walk in a straight line and my left side was weak. I didn’t think it was blood sugar related as I was not having my normal hypo warning signs. The attacks became worse and I was admitted to A&E. When I told the admitting doctor about my symptoms and my low blood sugar he told me that they would only treat one thing and I had to choose which one! I opted for the neurological symptoms and was referred to a neurologist. The neurologist discharged me with a diagnosis of migraines and stress telling me that I had made up my symptoms. I left hospital wondering what kind of person I was if I could make up my illness yet it seemed so real to me.

From 2008 until 2011 I was permanently unwell with balance issues, a permanent headache, depression and left sided weakness. I put on a further 5 stone meaning I was now obese. In the summer of 2011, I started to have episodes where I would lose my memory and think that I was in a dream. In one of these episodes I passed out and ended up with a black eye. I also had severe migraines and had to call out the emergency doctor. My GP referred me to another neurologist but again despite running several tests he was unable to come up with any other diagnosis than migraines.

In October 2011 my GP took several blood tests, one of which was fasting blood glucose. My blood sugar was 2.9. The test was repeated and this time the result was 2.1. I was then referred to Dr Toh, an Endocrinologist at the local hospital.

I will always be grateful to Dr Toh. She was the first person to listen to me and take my blood sugar problems seriously. I took my blood sugar readings which indicated that I was permanently hypo. Dr Toh was certain that it was an insulinoma. As I had experienced blood sugar problems for so many years it was likely that it was benign and in fact this was the case. Tests confirmed that I had a 1cm lesion in the head of my pancreas. Apparently I was a text book case. My husband and I just laughed. For years I’d been told that my symptoms didn’t fit any illness and here I was a text book case. I guess we had just been looking in the wrong textbook all these years!

I was referred to Dr Simpson at Addenbrookes Hospital who was brilliant. She wanted to run the tests again to ensure that the diagnosis was correct. I was admitted to hospital as my blood sugars were unstable and that I was now hypo unaware, meaning that my body was so used to hypos that it didn’t react when my blood sugar dropped.

The 78 hour fasting test confirmed low blood sugars with abnormally high insulin levels. An Endoscopic MRI showed the lesion clearly. Unfortunately it was in the head of pancreas so I needed to have a Whipple operation in which the surgeon removes the head of the pancreas, the gall bladder, duodenum and part of the stomach. It was a major operation with many complications but I had no choice. I had been told that if I did not have the operation it was possible that I would have a massive stroke, heart attack, fall in a coma or die in my sleep.

I had my surgery on the 21st May 2012. The operation took over 11 hours. When I woke up I had so many drains and wires that I didn’t dare move. I had my own nurse to look after me the whole night. Incredibly my blood sugar levels were normal straight away.

I spent 1 night in recovery, 2 nights in ICU and 2 weeks in a surgical ward. I found the recovery very hard. I was in pain, constantly being sick and very tired. I developed pneumonia and my wound opened. The multidisciplinary team were excellent. On a daily basis I saw the surgical and endocrinologist teams as well as dieticians and physiotherapists.

Being discharged was a major step in my recovery. I made the effort to get dressed every day and found that I could eat and drink without being sick. The hospital had arranged for the district nurse to come in daily to wash and change my wound and I appreciated their support during this time.

The post op support from Addenbrookes has been fantastic. Dr Simpson and the surgical team will see me on a regular basis to ensure all is well.

I am now 11 weeks post op. I still take painkillers and get tired very quickly. I have friends doing the ironing and cleaning for me and most of our meals are ready meals. However I love not having to eat all the time and my confidence is starting to grow again. I have also lost 4 stone without any effort.

As I’ve had hypos most of my adult life, it is difficult to know what my life will be like without them but I’m looking forward to it!

Copyright and Content: Content on this site has been sourced from the NET Patient Foundation that supports people diagnosed with neuroendocrine tumours and their families.For further information visit: www.netpatientfoundation.com